WHAT ARE SUPPORTS?

The concept of supports originated about 15 years ago and it has revolutionized the way habilitation and education services are provided to persons with mental retardation. Rather than mold individuals in to pre-existing diagnostic categories and force them into existing models of service, the supports approach evaluates the specific needs of the individual and then suggests strategies, services and supports that will optimize individual functioning. The supports approach also recognizes that individual needs and circumstances will change over time. Supports were an innovative aspect of the 1992 AAMR manual and they remain critical in the 2002 system. In 2002, they have been dramatically expanded and improved to reflect significant progress over the last decade.

Supports are defined as the resources and individual strategies necessary to promote the development, education, interests and personal well being of a person with mental retardation. Supports can be provided by a parent, friend, teacher, psychologist, doctor or by any appropriate person or agency.

Why are supports important?

Providing individualized supports can improve personal functioning, promote self-determination and societal inclusion, and improve personal well-being of a person with mental retardation. Focusing on supports as the way to improve education, employment, recreation and living environments is an important part of person-centered approaches to providing supports to people with mental retardation.

How do you determine what supports are needed?

AAMR recommends that an individual’s need for supports be analyzed in at least nine key areas such as human development, teaching and education, home living, community living, employment, health and safety, behavior, social and protection and advocacy.

What are some specific examples of supports areas and support activities?

Human Development Activities

• Providing physical development opportunities that include eye-hand coordination, fine motor skills and gross motor activities
• Providing cognitive development opportunities such as using words and images to represent the world and reasoning logically about concrete events
• Providing social and emotional developmental activities to foster trust, autonomy and initiative

Teaching and Education Activities

• Interacting with trainers and teachers and fellow trainee and students
• Participating in making decisions on training and educational activities
• Learning and using problem-solving strategies
• Using technology for learning
• Learning and using functional academics (reading signs, counting change, etc.)
• Learning and using self-determination skills

Home Living Activities

• Using the restroom/toilet
• Laundering and taking care of clothes
• Preparing and eating food
• Housekeeping and cleaning
• Dressing
• Bathing and taking care of personal hygiene and grooming needs
• Operating home appliances and technology
• Participating in leisure activities with the home

Community Living Activities

• Using transportation
• Participating in recreation and leisure activities
• Going to visit friends and family
• Shopping and purchasing goods
• Interacting with community members
• Using public buildings and settings

Employment Activities

• Learning and using specific job skills
• Interacting with co-workers
• Interacting with supervisors
• Completing work related tasks with speed and quality
• Changing job assignments
• Accessing and obtaining crisis intervention and assistance

Health and Safety Activities

• Accessing and obtaining therapy services
• Taking medication
• Avoiding health and safety hazards
• Communicating with health care providers
• Accessing emergency services
• Maintaining a nutritious diet
• Maintaining physical health
• Maintaining mental health/emotional well-being

Behavioral Activities

• Learning specific skills or behaviors
• Learning and making appropriate decisions
• Accessing and obtaining mental health treatments
• Accessing and obtaining substance abuse treatments
• Incorporating personal preferences into daily activities
• Maintaining socially appropriate behavior in public
• Controlling anger and aggression

Social Activities

• Socializing within the family
• Participating in recreation and leisure activities
• Making appropriate sexual decisions
• Socializing outside the family
• Making and keeping friends
• Communicating with others about personal needs
• Engaging in loving and intimate relationships
• Offering assistance and assisting others

Protection and Advocacy

• Advocating for self and others
• Managing money and personal finances
• Protecting self from exploitation
• Exercising legal rights and responsibilities
• Belonging to and participating in self-advocacy/support organizations
• Obtaining legal services

MULTIPLE VULNERABILITIES

Many, if not most, of the people with mental retardation convicted of capital murder are doubly and triply disadvantaged. In general, America’s prison population is made up disproportionately of poor people, minorities, the mentally ill, and those who were abused as children. Not surprisingly, the mentally retarded people who become enmeshed in the criminal justice system usually share one or more of these characteristics: many of them come from poor families, suffered from severe abuse as children, and/or face mental illness in addition to their retardation.

A history of severe childhood abuse is particularly common among defendants with mental retardation convicted of capital murder. While the relationship between abuse and adult behavior is complex, "Strong evidence exists that a person who was abused as a child is at risk of suffering long-term effects that may contribute to his violent behavior as an adult," particularly if the abuse was severe physical abuse that caused serious injury to the child. The long-term negative effects of childhood abuse may be even greater for people whose cognitive abilities are impaired and whose ability to navigate in the world is already seriously compromised by mental retardation.

Luis Mata was executed in Arizona in 1996, convicted of rape and murder. Mata suffered organic brain damage from multiple medical traumas and had an I.Q. tested variously between 63 and 70. Mata's alcoholic father beat all of his sixteen children, but he picked primarily on Luis, subjecting him to constant physical abuse--kicking him, punching him, and beating him with electrical cords. When Luis Mata was six, he fall off a truck, badly fracturing his skull, but his family was too poor to obtain medical treatment for him. This and other medical traumas may have contribute to his neurological deficits.

Freddie Lee Hall, with an I.Q. of 60, is on death row in Florida, convicted of killing a young pregnant woman, Hall was one of seventeen children in an impoverished family. As a child, he was "tortured by his mother, sometimes stuffed in a sack and swung over a fire, or tied to the rafters and beaten." His mother even encouraged neighbors to beat her son, and she buried him in the ground as a "cure" for his asthma.

Robert Anthony Carter, who had mental retardation, was convicted of a murder committed when he was seventeen and was executed in 1998. One of sic children, Carter was abused by both his mother and stepfather, who whipped and beat him with belts and cords. Carter's siblings would be forced to hold him down while his mother beat him. At other times, his mother would wait until Carter was asleep and then begin to whip him. He also suffered from several serious head injuries as a child - including one in which he was hit so hard with a baseball bat on the head that the bat broke.

Many capital defendants with mental retardation also suffer from mental illness. Although the two conditions are often confused, they are different disorders. Mental illness almost always includes disturbance of some sort in emotional life; intellectual functioning may be intact, except where thinking breaks with reality (as in hallucinations). A person who is mentally ill, e.g. who is bipolar or suffers from schizophrenia, can have a very high I.Q., while mentally retarded person always has a low I.Q.  A person who is mentally ill, e.g. who is bipolar or suffers from schizophrenia, can have a very high I.Q., while a mentally retarded person always has a low I.Q. A person who is mentally ill may improve or be cured with therapy or medication, but mental retardation is a permanent state. Finally, mental illness may develop during any stage of life, while mental retardation is manifest by the age of eighteen. The percentage of mentally retarded people who are also mentally ill is not known with any certainty; estimates vary from 10 percent to 40 percent. Persons who suffer from both mental illness and mental retardation are particularly disadvantaged in dealing with the criminal justice system because each condition can compound the effects of the other.

Nollie Lee Martin had an I.Q. of 59 and was further mentally impaired as a result of several serious head injuries he had received in childhood. As a child he was physically and sexually abused and came from a family with a history of schizophrenia. His mental history included psychosis, suicidal depression, paranoid delusions, and self-mutilation. After being convicted in 1978 of kidnapping, robbery, and murder in Florida, Martin spent more than thirteen years on death row mostly incoherent and rocking back and forth on the floor of his cell. He required constant medication for his mental illness and hallucinations. He beat his head and fists against the cell wall and would mutilate himself. He was executed in 1992.

Emile Duhamel was convicted of the aggravated sexual assault and murder of a nine-year-old girl in 1984. He had an I.Q. of 56 and organic brain disease and suffered as well from paranoid schizophrenia and dementia. After a decade of legal proceedings over his competency for execution, Duhamel died in his Texas death row cell in 1998.

For the most part, statutes prohibiting the execution of persons with mental retardation adopt a version of this AAMR definition Seven States and the federal government do not specify an I.Q. level in their definition, making this an issue for the court to determine based on expert testimony. Two state statutes say that an I.Q. of 70 or below "shall be presumptive evidence of mental retardation," thus leaving open the possibility that a person whose I.Q. is above 70 may also, through expert testimony, estabilish his or her mental retardation.

The intellectual capacity of children was historically the benchmark for assessing the extent of retardation. In 1910, the American Association on Mental Deficiency identifies the three "levels of impairment" characterizing the "feebleminded”: there were "idiots", people "whose development is arrested at the level of a 2 year old";imbeciles," people whose development is equivalent to that of a 2 to 7 year old at maturity"; and morons," people "whose mental development is equivalent to that of a 7 to 12 year old at maturity." Fred J. Biasini, et al., The  terminology entered common discourse as epithets reflecting the country's shameful history of prejudice and mistreatment of people with mental retardation. The punitive, exclusionary, and racist historical manipulation of the concept of "mental retardation" are addressed in Robert Perske, Deadly Innocence?

With the upper ceiling on mental retardation reduced from an I.Q. of 85 to an I.Q. of 70, far fewer Americans are today diagnosed as "mentally retarded" than before. Although the lower I.Q. ceiling for mental retardation was agreed upon in part to avoid applying stigmatizing labels to so many people whose intelligence was below average, the changed I.Q. ceiling ironically had the effect of cutting from social services such as special education many people who would have otherwise benefited from the extra support. Scholars have emphasized that because of the possibilities of testing error, a person with an I.Q. of up to 75 should be considered "retarded" if the diagnoses is necessary to ensure access to special education or other assistance.

Mental Retardation in America: A Historical Reader_III

(Part-III)

A problem in reading the various chapters of this book, which is also true of working with mental retardation in the real world, is the wide range of persons who are classified as mentally retarded. This is illustrated at one extreme by the vignettes of formerly institutionalized young men inducted into the armed services during World War II, who, in many instances, served effectively. In that time of great social need, it was these soldiers’ abilities, not their disabilities that counted. At the other extreme, in my work I encounter youngsters whose mental retardation is insignificant as compared with their severe disorders of behaviors. Finally, it is the behavioral disorder and not intellectual retardation that is decisive and destructive to family life. This suggests a fundamental flaw in the concept of mental retardation: “mental” life constitutes not only intellectual ability (as measured by IQ tests), but also attributes that are emotional and moral (for lack of a better word) as well. The overvaluation of IQ seems to be leading to decisions regarding capital punishment. The underestimation of emotional and behavioral dyscontrol and the systematic abolition of residential placement for children still give rise to situations as burdensome and cruel for families as any described in this book.

Mental Retardation in America tells a story with a broad sweep—how a society has dealt with mental retardation through profound social and scientific changes. At this end, we are in many respects back where we started, with retarded children cared for within their families. The plot is powerful, the questions profound, and the answers that have been given over the years show the usual flaws and faults of most human endeavors.

Mental Retardation in America: A Historical Reader_II

(Part-II)

The second equally influential study was The Kalliakak Family; A Study in the Heredity of Feeble Mindedness by Henry Goddard, 1912. Inspired by the new Mendelism, the study traced back six generations of the family of a young institutionalized woman and found an appalling amount of defectiveness. Yet there was also information about “a good family of the same name.” it emerged, of course, that the forebear met “a feeble-minded girl by whom he became the father of a feeble-minded son.”  Subsequently the father “married a respectable girl of good family, “by whom he produced children with “a marked tendency toward professional careers,” who had “married into the best families. . . . Signers of the declaration of independence ….etc.” Goddard invented the pseudonym kallikak by combining a Greek root meaning “beauty” (kallos) with one meaning “bad” (kakos). The lesson was clear and dramatic: the study linked medical and moral deviance and fused the new Mendelian laws with the old biblical injunction that “the sins of the fathers shall be visited on the sons”

These ideas fueled the eugenics movement and the campaign for sterilization of the mentally retarded, which, according to the editors, was “the nadir of the American experience with mental retardation.” The Supreme Court upheld eugenic sterilization in 1927, with Oliver Wendell Holmes’s pronouncement that “three generations of imbeciles is enough.” After World War II and the revelation of Nazi experience with eugenics, support for sterilization faded. The sterilization issue inspired writers—especially Steinbeck and Faulkner—to explore the lives of mentally, retarded characters in works that are sensitively reviewed in this book.

After World War II, and with the ensuing general prosperity, the activism of parents on the behalf of their physically and mentally handicapped children arose; such activism was inspired by a new belief in human rights after the Nazi atrocities and by the “intense middle-class familialism” of the postwar years. This attitude led to a desire that retarded children be a part of their families and receive the same degree of care and concern—and ultimately the same services, including education—as “normal children.” Deinstitutionalization followed, and in 1975 Congress enacted a guarantee of free public education to children with disabilities by passing the Education for All handicapped Children Act. The special role of President John F. Kennedy, his sister Eunice Kennedy Shriver, and the rest of the Kennedy family in supporting services—including the Special Olympics, an important example of the “ideology of normalization”—and advocating for the mentally retarded persons should be noted. Further steps were taken to bring persons with mental retardation under the equal protection of the laws as American citizens; these measures included the ruling that people should be served in the least restrictive environment and the decisions that established the community as the site of services for people with mental retardation and disallowed that condition as the sole justification for institutionalization. 

Mental Retardation in America: A Historical Reader_I

(Part-I)

This is highly readable and well-edited historical anthology, a wide-ranging collection that deals with mental retardation over two centuries. The focus is on the views and actions of society. The book deserves perusal by anyone interested in mental retardation.

            The editor consider the history of retardation in the context of general history of the recognition of “Mongolism” by John Landon Down, the racial detour that accompanied that recognition, and eventual delineation of trisomy 21 as the cause; the other is a treatise on the pathology of mental retardation by Dr. William Fish, of the Albany Medical College, which he wrote in 1879. The treatise is welcome fare for a physician reader. Discussed are consanguine marriages, abnormalities of the “minute structure of the brain,” microcephaly, epilepsy, and cretinism in Switzerland (…the precise element or elements producing it have not as yet been determined”), hydrocephaly, trauma and paralysis. Equally clear is Dr. Fish’s prescription, “The necessity for training schools and asylums for the reception of the idiotic and imbecile is now unquestioned….[Its is] the duty of society to provide for these feeble ones… An idiot child in the family of a laboring man is a burden weighing heavily upon him and may indirectly by the means of rendering the whole family dependent on the state for support.”

This rather straightforward approach contrasts with the complexity of the history of mental retardation in American society, which is reflective of the larger course of events in American society. The full sweep of that history is outlined from retarded persons functioning as integral parts of their families in the Colonial and early rural United Stats to the almshouses of the late 18^th and early 19^th centuries, where the poor, infirm, insane and idiotic were conflated in conditions of indescribable depravity. Later came the specialization of institution for epileptics and the retarded. The pressures of urbanization and industrialization the needs of immigrant families and the application of scientific concepts to the definition of retardation, e.g., the advent of intelligence tests and the familiar categorization of the retarded as idiots, imbeciles and morons) led to the heyday of institutionalization. Between 1870 and 1880, there was a fivefold increase in the number of feeble-minded people.

Social forces and scientific interest led to intense focus on and very convoluted thinking about the retarded. The 19^th century view of degeneracy (roughly synonymous with bad heredity) led theorists to conceive of social problems such as insanity, poverty, intemperance and criminality as well as idiocy as interchangeable. This view was expounded in “The Jukes” A Study Crime, pauperism Disease and heredity by Richard Dugdale, 1875, a study of a rural clan that over seven generations produced 1200 bastards, beggars, murderers, prostitutes, thieves and syphilitics.